There are eight Genomic Networks of Excellence across England, supported by the NHS Genomics Programme. Here are the latest updates on each network, including recent engagement activities and opportunities to get involved.
Rare Disease Network of Excellence Workstreams diagram
Rare and Inherited Disease
The Rare and Inherited Disease Network of Excellence (RD NoE) held a stakeholder event in London at the beginning of November, where the aims and vision of this group were shared by network leads, supported by plenary presentations from Professor Dame Sue Hill (NHS England), Dr Richard Scott (Genomics England), Dr Kath Bainbridge (Department of Health & Social Care), Professor Patrick Chinnery (Medical Research Council) and Dr Sarah Wynn (Unique).
Said Professor Rob Taylor, Scientific Director, NEY Genomic Laboratory Hub, of the event… “with over 130 attendees, it was great to see such fantastic engagement from colleagues across the country to contribute to the work of this Network in addressing some of the key challenges in rare disease diagnostics. With the breadth and depth of expertise and support we have from academia, industry and NHS partnerships, it will be exciting to see what is delivered over the next two years.”
The RD NoE aims to accelerate delivery of the clinical and diagnostic ambitions of the Rare Diseases Action Plan 2023 and UK Rare Diseases Framework for the benefit of all NHS patients and families affected by rare genetic conditions. The Network has four workstreams – targeted at improving patient testing pathways, accelerating diagnostic discovery and the adoption of new science and technology to provide equity of access to the best available genomic testing capability and research trials.
A survey is being created to map potential stakeholders within the network to ensure the widest possible engagement across different workstreams. The link will be circulated very soon.
Genomics & Artificial Intelligence Network (GAIN)
The Network officially launched in November with nearly 300 people joining a webinar to understand what this network will offer and how they can get involved. Over 120 members of the public from across the country have already been actively involved in sharing their thoughts about how AI could, or should, benefit genomic medicine. People working in AI from industry, academia and the genomic community were encouraged to get involved either to showcase their own genomic AI test cases, or to support conversations about embedding AI across the genomic workforce. More information is available here Home – GAIN
Pharmacogenomics and Medicines Optimisation
As co-lead for this Network, the NEY GMS is arranging a stakeholder event in Newcastle in late spring of 2025. It will be held at the Catalyst in Newcastle, attracting delegates from across England. More details will follow in the new year.
Stakeholder events have already taken place in the North West (Liverpool) earlier this year and London (presentations here) on 17th October to share updates on PROGRESS and other workstreams, including the development of four pilot sites to support the implementation of NICE guidance in relation to the use of Clopidogrel following Stroke – one of which is in the NEY region. Results are not expected until summer 2025.
Prenatal Genomic Network of Excellence
The NEY GMS is working in partnership with other regional Genomic Medicine Services, academia, the third sector and industry in the Prenatal Genomic Network of Excellence. We are leading on a workstream to consider where and how prenatal genomic testing should be delivered in pregnancy, and aim to develop innovative approaches to service delivery, including supporting individuals from underserved and diverse backgrounds.
We are creating and refining a standardised methodology to capture data to help define areas for further exploration including equity of access to services. We also aim to explore and increase the quality of the referrals into prenatal clinical genetics pathways.
As the technology continues to evolve, these networks will bring key people together to drive developments in prenatal genomics services. We’ll keep you informed as this network becomes established and how you can get involved.
Circulating Biomarkers (ctDNA)
This NHS Genomic Network of Excellence is building on existing circulating biomarker testing projects as it looks to expand the innovative test into a range of other tumour types.
The ctDNA project in non-small cell lung cancer, co-led by the NEY and North Thames Genomic Medicine Services, has just been Highly Commended in the Health Service Journal ‘Modernising Diagnostics’ Awards 20024. Read more here: HSJ Awards 2024: Modernising Diagnostics Award
Haemato-Oncolgy
The Haemato-Oncology Network of Excellence (Haem-Onc NoE) is co-led by NEY and Central & South Genomic Medicine Services and aims to accelerate the translation of research to patient testing. The team is exploring six work packages all touching on areas of unmet need or where more advanced technologies would benefit patients in the extent or speed of genomic testing they receive. We’ll bring you progress reports as the workstreams evolve.
Infectious Disease (Respiratory)
As part of the Infectious Disease Network, Newcastle Hospitals is piloting new ‘world first’ technology to read the DNA of infection causing bugs. Scientists and medics at Newcastle Hospitals are part of the national pilot across 10 sites, led by Guy’s and St Thomas’ NHS Foundation Trust, in partnership with Oxford Nanopore Technologies, to rapidly diagnose the cause of serious respiratory infections in critically ill patients. Read the full story here
Cardiovascular Disease (CVD)
Twenty cardiac charities from across the country came together in November to hear more about cardio-genomics. The event, which was organised by patient representatives from the South East Genomic Medicine Service, was a fantastic opportunity to showcase the benefits that genomic medicine can offer cardiac patients and talk about some of work underway as part of the CVD Network of Excellence. Attendees heard about work which is identifying people who are at risk of inherited cardiac conditions and offering them genetic testing. By doing this we can ensure they get treatment before they have a cardiac incident.